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Need some advice...

Hi everyone. I need some advice or suggestions on what to do. Here's my situation, I've had Lupus for 10 years now. In the first six months that I had it this illness was terrible. I was practically bed bound for the whole time. After that, with help from the doctors and medication I went into remission for about six years. Everything was great! Then I got pregnant. The pregnancy went fine and I had a beautiful baby boy. However, since the birth I have not been the same. My Lupus has come back and now worse than ever. My son will be four in October and in the four years since he's been born I have had plerisy, skin rashes and itchiness, sores in my mouth and nose, numbness and fatigue in the arms and shoulders, extreme fatigue (had to go do a sleep test), really bad migraines, kidney stones, pain in knees and feet, swollen feet and hands, and the most concerning of all memory loss, and the list goes on and on and on. My husband does not work because he has chronic back pain, so I'm the only one working and I just feel one of these days I just won't be able to get up out of bed. I just feel like my body is going to give out any day. It terrifies me that if that does happen how will I feed my family and pay my bills? I can't afford to go on short term disability because that only pays me 60% of my pay. I called a disability lawyer to talk to them about it getting Social Security Disability benefits. They told me that I have a good case to try and apply for disability, but since I'm still working they can't help me. Not until my hours have been significantly reduced due to my Lupus or I'm out of work. I just can't afford that. I don't know what to do!

I'm sorry I can't offer any advice on your situation. All the boards I've seen say that they get denied when they apply when they have a job. I suppose I understand that logic. If you can work, you should. While it's difficult, you obviously "can" work (because you are). If you "couldn't" there wouldn't be a reason strong enough to get you into work - that includes money. You've effectively made a choice that you "need" money more than you "need" to rest & take care of your health. Please know that I do not trivialize, or condescend your choices you feel you have to make. I also know pushing oneself past the point of needing to stop can be even more detrimental.
I want to work, but right now I can not. I tried to hang on to my job during this flair as long as I could. Currently, I've been 6 months out of work after being fired due to my medical disability. I have not applied for Disability, as I'm hoping the medication kicks in and I can get back to work. Being without work means sacrifices, it means going without, it means being at the mercy of the kindness and help of other, and it means asking for help. None of these are appealing options, but it is waht you do when you don't have the luxury of choice. We were able to get an adjustment on our mortgage interest rate dropping our payments, and my car is paid off, but it doesn't have a/c and in Florida with the sun, that means I can't drive it, but because I have it, I don't qualify for government assistance. It means cutting off the cable, eating at home, and even cutting back on food budget.
Sure, being out of work doesn't feel like it's an option. But if you feel like you still get to make the choice, then things are not that bad. I'm not saying you don't hurt, and I'm not saying you don't struggle. I'm saying I'm envious you make the choice to continue going to work even when it's so incredibly hard.
I hope you have a good doctor that can get you back to that remission point so you don't have to struggle with the flair and symptoms. If it gets worse where you can not make yourself go into work, or your employer decides that for you, I wish for you a swift resolution to help take care of your family and yourself without too much hardship.
Mom's in general put everyone else first, often to their own detriment. Please remember if you don't take care of you you won't be able to care for those that depend on you.
Sending you hugs and spoons.

Thank you for your reply Abbyition. I do appreciate it. I see your point when you say if i'm still working I can still work. I guess, the reason why I push myself is for my children. They don't deserve to live like this just because i have this illness. So everyday I pop my pain meds and all the other meds and force myself to go to work. I just feel that if I stop working my children will be the ones that will pay the most consequence. My hubby and I we are adults so we can get by, we've done it before. I feel I'm getting close to the point that my employers are probably thinking of getting rid of me also. I was demoted this year and my wages reduced by 25%. I thank you for your word of encouragement and I hope that your situation will turn around for you soon.

Ok I am stepping in here because mixing you need to understand that you are understood. I think anyone with a chronic illness knows we would rather be working. Living on disability is not living the life of leisure. You are in a very difficult place but one many of us find ourselves in and one rule here is that NO ONE will ever be made to feel. Ad because they are sick!

Sounds tome like you HAVE worked as hard as you can go keep working. Your dilemma here seems to be that you don't think you can do it anymore but are worried about the financial aspects. We all go through that. It is normal! Everything you are feeling is normal, heart breaking, emotional and down right unfair. Often we push ourselves to keep going long beyond what we should because we are thinking of family, money, being productive and not wanting to feel like a failure.

getting to the point where you know you can't do it anymore ISN'T failing. You didn't make a choice to get sick and it's not like you haven't been trying from what I read. I was in your place at one time. I kept working long after I should have because of all the reasons I mentioned above. In doing so I kept the stress on my body and mind getting worse and worse until one day Lupus left me no option. I had a seizure (not the first but the first tonic clonic or grand mal so the first one that was recognized) in my office. I was never able to go back and I am a single mother so there was no "luxury" to my stopping work.

It was hard. Looking back I don't know how we made it but we did and my daughter just graduated 6th in her high school class and is going to a good 4 year college. We survived and things are ok. If I had it to do over again the only thing I would have done differently is not waited for Lupus to make the choice for me. I would have gone out on my terms, with a plan of some sort as you are thinking of doing. It still wouldn't have been easy but it would have been easier

Good job to you for thinking it through. Sometimes you have to see that your family needs you healthier and alive more than it needs your pride

Last edited by tgal; 09-10-2013 at 04:47 PM.

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

........... Sometimes you have to see that your family needs you healthier and alive more than it needs your pride

it is never easy to decide it is time to stop working ..... but you are important .... you need to be well enough to be part of your family. it will not be easy whenever the time comes to stop working.

Thats a tough one, even if you do stop working so many hours it will still be a while before you would get approved and start getting money for disability. I would apply anyway even though you know your not going to get approved because when you finally can't work and get disability they will look back. All states are different so I don't know if they would count because you are working now but having that application in and keep it updated helps in the long run. You have to remember unlike someone in pain where they can take pain pills to get through the day, with lupus pushing your body makes you sicker. 60% of your pay is better than risking your life sometimes and allows you to recuperate to get you in a remission again. I understand that need for money and I have no luxuries in my life and need every penny of my monthly disability money. I am lucky to still have my mom help and I help her but it's still tight every month. Even though I hate that unable to make more money I am grateful for the benefits I got through disability. The health insurance alone made everything worth while and having something constant and steady like disability payments relieves so much stress.
I wish you luck and hope you start feeling better quickly.

Being out on short term disability allows you to apply but if you go back to work the application is cancelled. In the US they do not allow you to work and to apply for disability. The short term disability does count as being out for disability reasons

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

Thank you for your reply Abbyition. I do appreciate it. I see your point when you say if i'm still working I can still work. I guess, the reason why I push myself is for my children. They don't deserve to live like this just because i have this illness. So everyday I pop my pain meds and all the other meds and force myself to go to work. I just feel that if I stop working my children will be the ones that will pay the most consequence. My hubby and I we are adults so we can get by, we've done it before. I feel I'm getting close to the point that my employers are probably thinking of getting rid of me also. I was demoted this year and my wages reduced by 25%. I thank you for your word of encouragement and I hope that your situation will turn around for you soon.

Thank you for your reply as well. As mom's we do tend to put the needs of others first, so I understand your concerns and worries. The thing is, how would the kids suffer if you stopped working and took care of your medical needs? Money is not needed to raise healthy, happy children. Children need love, food, a roof over their head and access to education to suceed. (sure those things take money, but somehow those things tend to be "found" when needed, and not always appealing as options, but survivable.) I've often found the children that didn't have to struggle are the ones that don't appreciate what they have and live less happy lives. Those that struggle know what it's like to do without, and thusly know what's important in life, making them happier. The kids that have challenges to overcome get stronger and learn those critical lessons earlier in life. Those that don't have to deal with fundamental issues like finding where their next meal is coming from often think that their broken game console is the end of the world. So sure, worry about where the next meal will come from, but if there's one thing we humans do - it's survive... So don't worry as much about the kids suffering. The kids always grow up and have mommy/daddy issues no matter what you do or don't do. At least with your (anyone who struggles like we do) issues your kids will have to face they will become more resiliant, and perhaps more sucessful because of the challenges of early independence.
There comes a time when you have to put your own well being first, and only you know when that time is here. I can say these words because I've lived them, both as a child growing up well below the poverty line, growing up too fast, and now as an adult that pushes myself too far I can't see my own limits for what they are.
We all walk our own path, sometimes that coinsides with other's walking the same direction, but it's never the same so take from my experiences the good you can and leave the rest. You and only you get to decide what's right for you. It's not a pretty picture staring in the mirror feeling so much pain from disease only to be confronted with all of the mental roadblocks and hurdles we face. I've found that with my medical issues, worrying only makes them worse. That doesn't mean I don't worry... But that I'm a work in constant progress trying to take my own advice. Progress for you may mean working another year carrying your burdens, it may mean change is needed sooner rather than later, but somewhere in there make time to make progress for you. Whether that's as simple as a relaxing bath or an extra nap or a pair of new shoes that helps your joints make it into work one more day, take care of you first. Your family will then have an example on how to live well themselves.
Tgal said so much I was trying to convey, but alas I'm still a newbie to my diagnosis, and these forums (even though not to my diseases) and it didn't come out as eloquent and meaningful. Thank you Tgal!